thump.
That's the sound of my head hitting the pillow this afternoon for a well-deserved nap... or rather, it would have been if Little O hadn't been such a godawful ratbag and woken up time and time again to scream the house down or throw up.
I bloody hate Fridays. Traditionally Tuesdays were my least favourite day of the week because while you can get a good nights sleep over the weekend and charge your batteries for Monday, there's no such opportunity for Tuesdays. You've still got to get up and have a day of misery at work, but you're running on less sleep and more angst than the day before. It's traditionally been a bit shit.
But now Fridays are a bit shit. I'm just so tired and fed up with being forced to be stay-at-home-mom that I spend the whole day watching the clock and waiting for my husband to get home. I had to get my sorry arse out of bed early this morning to take Bob to the vet for some vaccinations, so I prayed Little O would do the decent thing and let me sleep as long as possible... no such luck. He woke up AS SOON as my husband left for work at 5.45am (a common theme, and I feel the two aren't entirely unrelated) and threw up, did a poo, then yelled at me to come and clean both messes up. And of course I couldn't get back to sleep after that, so I was all kinds of moody at the vet and have continued to simmer and seethe ever since.
Little O is just driving me mental. He's my favourite person in the whole wide world, which is why when he acts up I get a bit demented. I feel like he's deliberately pushing my buttons( which of course he isn't), and sometimes when he cries or coughs or poos and MAKES himself throw up it feels really personal. It feels as though I'm failing him somehow, and he knows it. We have a procedure next week to try Botox injections into Little O's stomach. And an endoscopy. And a contrast study. And anaesthesia. And all kinds of other bollocks that I'm too tired and miserable to discuss. I just want something to change. I want the doctor to point at a screen, go, "Oh look! That's the problem!", and fucking fix it. Little O and I have been dealing with this for 15 months now. It isn't fair. MAKE THIS REFLUX GO AWAY.
I was at the gym yesterday doing a Zumba class, and right slap bang in the middle of some kind of ridiculous twisty move, two things happened. One, I felt a rib go 'pop'; and two, it struck me how pointless everything else in my life is until this reflux gets sorted. Why the hell am I investing my time and energy into an extremely camp exercise class, when my child is at home throwing his guts up every two hours? My mother wants me to go and visit the UK in February with Little O. By myself. For 'a break', as she put it. Yeah, right. Because travelling for nine hours on a plane with a baby who won't stop throwing up will of course be 'a break'. That's it's very definition. Don't get me wrong: I don't mind going to the UK and taking a small child with me, but I don't want to do it alone. It took all the strength in both of us to keep calm and carry on when my husband and I flew over at Christmas, and it took even MORE strength in me to do the same in Seattle. It's just different when you're by yourself, and it's hugely different when you're dealing with a baby with special needs.
Still, Sunday beckons, and with it the enticing invitation to appear on BBC Radio. I'm naturally a night owl so I'm actually really, really looking forward to drinking loads of Diet Coke and staying awake until the wee small hours. And I'll have a fantastic, legitimate reason for poking my husband to get out of bed in the morning to deal with Little O's vomit/poo/screaming, because I'll have been working until 3am.
It's amazing that I consider that 'a break'.
Tina.
Showing posts with label Reflux. Show all posts
Showing posts with label Reflux. Show all posts
Friday, August 27, 2010
Wednesday, August 4, 2010
From good to bad to worse
Yeah, so I started today out feeling better about the 'situation' and even got as far as to write a post about the good news. Then the rest of my day took over and now I feel desperately unhappy again.
I'm just not getting a good grip on Little O's feeds. I've been trying for so long to adapt and persevere, but it seems like there's a constant wall up ahead that I can't climb over. Since he came home from the hospital on June 10th, 2009, my husband and I have battled and battled to make sure Little O has been fed properly and makes gains in his growth and development. We've tried so hard to offer him a variety of foods; changed formulas three times (four if you include breastmilk); worked with gravity feeds, pump feeds, bottle feeds, spoon feeds, safety-feeder feeds; and all along we've had experts in our ears telling us to 'switch this', or 'stick with that'.
I'm exhausted, and I've spent a great deal of today in tears. Last week we weighed Little O on our home scales and were dismayed to see he still hasn't gained any weight since April. April! I took him to Seattle in April.... it seems a very long time ago. After noticing this problem I called his nutritionist and suggested to her we try feeding him his PediaSure when he's asleep ONLY. He's generally a very good sleeper and will sleep for about 11 or 12 hours at night and another three or four in the afternoon, so the idea of slowly pump-feeding him while he naps seems like a good solution. The theory is that he'll not only stop throwing up (because the rate is so slow on the pump), but it will also free up large portions of the day to concentrate on oral feeds. If I'm not having to force liquid nutrition into him while also forcing a spoon into his mouth, it means he's less likely to throw up solids, AND he'll hopefully enjoy oral feeds more. And then, the more oral intake he has, the less liquid nutrition he needs.
IMAGINE! Imagine this glorious world where your baby boy doesn't live in constant pain. Imagine packing the burp cloths and wipe-up rags into storage because you don't have to mop up sick five times a day. Imagine feeding your child like any other family, where dinner time isn't battle-time and you don't have to mentally and physically gear yourself up for war. Imagine putting your child to bed knowing they've felt no discomfort all day and that they can look forward to a tomorrow where eating is a nice, enjoyable activity. Just imagine...
Today I can't imagine this world. This world seems very far away. My baby boy is nearly 15-months-old and his reflux is still the hardest challenge he faces. He woke up several times in the night to throw up or just scream, and even when I went in at 7.30am, the pump still had nearly 100ml left to go. I don't know what to do. I can't set the pump to go any faster because he'll just throw it up, and I can't leave the food in the bag because he needs the nutrition to grow. I can't run the pump for longer because he needs to be asleep, and I can't let him sleep for longer because then he won't nap in the afternoon...
Yesterday I was so pleased that Little O went down for his nap at 12pm and slept right through until 3.30pm. I was pleased, because it meant he got all his PediaSure and I didn't have to worry about a thing. That was, until I went to wake him up and saw that the med-port on his extension tube (the tube that clicks into his stomach) had popped open during his nap, and he was laying in a large, wet pool of pink PediaSure. So after three and a half hours of pump operation, Little O had digested exactly nothing. Nada. Zilch. And this morning I went in at 7.30am because he was yelling his head off, only to discover that he'd thrown up a large volume of goo, and was now laying in a large, wet pool of chocolate PediaSure. And that brown stuff STAINS. So, for the second time in two days I had to change his bedclothes, comfort a soaking wet little boy, and fret about the fact he's not getting enough food digested.
I am just SO DONE WITH REFLUX! I cannot, cannot keep fighting this battle. I just can't do it. I don't have the patience. I certainly don't have the energy. I cannot keep explaining to experts how horrific our lives have become only to have them dismiss my words. I'm so sad and angry and frustrated. I need for this to go away; I need a Fairy Godmother to come and visit my house and whisk us all away to that lovely other world where Little O doesn't cry out in pain in the middle of the night and where bedsheets aren't stained to the point of embarrasment. I need for someone else to take care of us. I need to be able to focus on something, anything else but whether my son is growing and eating and comfortable. I need a break. A real, honest break.
I need to see to my sister. I really miss her. I miss both my sisters, but sometimes you just need a hug from your big sister and you get the energy back to fight another day.
God, I need some help. And I need to stop crying.
Tina.
I'm just not getting a good grip on Little O's feeds. I've been trying for so long to adapt and persevere, but it seems like there's a constant wall up ahead that I can't climb over. Since he came home from the hospital on June 10th, 2009, my husband and I have battled and battled to make sure Little O has been fed properly and makes gains in his growth and development. We've tried so hard to offer him a variety of foods; changed formulas three times (four if you include breastmilk); worked with gravity feeds, pump feeds, bottle feeds, spoon feeds, safety-feeder feeds; and all along we've had experts in our ears telling us to 'switch this', or 'stick with that'.
I'm exhausted, and I've spent a great deal of today in tears. Last week we weighed Little O on our home scales and were dismayed to see he still hasn't gained any weight since April. April! I took him to Seattle in April.... it seems a very long time ago. After noticing this problem I called his nutritionist and suggested to her we try feeding him his PediaSure when he's asleep ONLY. He's generally a very good sleeper and will sleep for about 11 or 12 hours at night and another three or four in the afternoon, so the idea of slowly pump-feeding him while he naps seems like a good solution. The theory is that he'll not only stop throwing up (because the rate is so slow on the pump), but it will also free up large portions of the day to concentrate on oral feeds. If I'm not having to force liquid nutrition into him while also forcing a spoon into his mouth, it means he's less likely to throw up solids, AND he'll hopefully enjoy oral feeds more. And then, the more oral intake he has, the less liquid nutrition he needs.
IMAGINE! Imagine this glorious world where your baby boy doesn't live in constant pain. Imagine packing the burp cloths and wipe-up rags into storage because you don't have to mop up sick five times a day. Imagine feeding your child like any other family, where dinner time isn't battle-time and you don't have to mentally and physically gear yourself up for war. Imagine putting your child to bed knowing they've felt no discomfort all day and that they can look forward to a tomorrow where eating is a nice, enjoyable activity. Just imagine...
Today I can't imagine this world. This world seems very far away. My baby boy is nearly 15-months-old and his reflux is still the hardest challenge he faces. He woke up several times in the night to throw up or just scream, and even when I went in at 7.30am, the pump still had nearly 100ml left to go. I don't know what to do. I can't set the pump to go any faster because he'll just throw it up, and I can't leave the food in the bag because he needs the nutrition to grow. I can't run the pump for longer because he needs to be asleep, and I can't let him sleep for longer because then he won't nap in the afternoon...
Yesterday I was so pleased that Little O went down for his nap at 12pm and slept right through until 3.30pm. I was pleased, because it meant he got all his PediaSure and I didn't have to worry about a thing. That was, until I went to wake him up and saw that the med-port on his extension tube (the tube that clicks into his stomach) had popped open during his nap, and he was laying in a large, wet pool of pink PediaSure. So after three and a half hours of pump operation, Little O had digested exactly nothing. Nada. Zilch. And this morning I went in at 7.30am because he was yelling his head off, only to discover that he'd thrown up a large volume of goo, and was now laying in a large, wet pool of chocolate PediaSure. And that brown stuff STAINS. So, for the second time in two days I had to change his bedclothes, comfort a soaking wet little boy, and fret about the fact he's not getting enough food digested.
I am just SO DONE WITH REFLUX! I cannot, cannot keep fighting this battle. I just can't do it. I don't have the patience. I certainly don't have the energy. I cannot keep explaining to experts how horrific our lives have become only to have them dismiss my words. I'm so sad and angry and frustrated. I need for this to go away; I need a Fairy Godmother to come and visit my house and whisk us all away to that lovely other world where Little O doesn't cry out in pain in the middle of the night and where bedsheets aren't stained to the point of embarrasment. I need for someone else to take care of us. I need to be able to focus on something, anything else but whether my son is growing and eating and comfortable. I need a break. A real, honest break.
I need to see to my sister. I really miss her. I miss both my sisters, but sometimes you just need a hug from your big sister and you get the energy back to fight another day.
God, I need some help. And I need to stop crying.
Tina.
Thursday, July 29, 2010
Little O is awesome
Little O met a MAJOR milestone today!
As most of you already know, my little boy has been tube-fed directly into his stomach since the day he was born, and we've always struggled to engage him with oral feedings because he has a strong aversion. The aversion is due to his God-awful reflux (GERD), which has led to a vicious cycle - he throws up - which makes him not want to eat - which means he doesn't try solid food - which means his reflux doesn't improve - which means he throws up - which makes him not want to eat - etc... etc...
Anyway, we've been looking for new foods and stronger tastes to help him want to taste and accept more, and this lunchtime we tried... dum dum dummmm... french fries!
Oh my God.
My Little O LOVES them! He likes to stick his tongue out and lick all the salt and grease off, and today he managed to do something he's NEVER done before. He bit off a small piece of fry, chewed it (with assistance), and then SWALLOWED it without choking!
There is no expression or emoticon obnoxious enough to express how I feel about this. It is the first step towards him being weaned off his feeding tube and I don't even care that fries are perhaps the very worst food you can eat. I just don't care! When a child who point blank refuses ANY food at all suddenly decides to bite, chew and swallow, then that child is allowed as many fries as they want.
My baby is a Superbaby. Feel free to gush in adoration.
As most of you already know, my little boy has been tube-fed directly into his stomach since the day he was born, and we've always struggled to engage him with oral feedings because he has a strong aversion. The aversion is due to his God-awful reflux (GERD), which has led to a vicious cycle - he throws up - which makes him not want to eat - which means he doesn't try solid food - which means his reflux doesn't improve - which means he throws up - which makes him not want to eat - etc... etc...
Anyway, we've been looking for new foods and stronger tastes to help him want to taste and accept more, and this lunchtime we tried... dum dum dummmm... french fries!
Oh my God.
My Little O LOVES them! He likes to stick his tongue out and lick all the salt and grease off, and today he managed to do something he's NEVER done before. He bit off a small piece of fry, chewed it (with assistance), and then SWALLOWED it without choking!
There is no expression or emoticon obnoxious enough to express how I feel about this. It is the first step towards him being weaned off his feeding tube and I don't even care that fries are perhaps the very worst food you can eat. I just don't care! When a child who point blank refuses ANY food at all suddenly decides to bite, chew and swallow, then that child is allowed as many fries as they want.
My baby is a Superbaby. Feel free to gush in adoration.
Tuesday, April 20, 2010
What was the point of that then?
After yesterday's debacle, I was sorta expecting an improvement in today's activites. Well, things didn't go quite as badly as Monday, but one majorly stoopid thing did.
We're up at CHOW at least once a month, and sometimes more than once a week. Well, even though I officially hate the drive up there after my speeding ticket yesterday (AND that bastard cop was waiting in exactly the same spot today in the other direction, catching us 'criminals' while we ferry our little darlings to and from the hospital), I had to do it again today for a Gastric Emptying Study. (It's not a proper noun, but I feel it adds gravitas, don't you?)
The point of a GES is to observe how the stomach and digestive tract responds to food, and how long it takes said food to move through a child's system until there is no trace of it left in the stomach. Usually this takes about 90 minutes. So, we arrived at 11am as instructed, after skipping Owen's breakfast to ensure his stomach was empty. Most children would be extremely put out about skipping a meal, but Owen quite frankly couldn't have cared less - in fact, his mood was better than usual because he hadn't spent several hours blowing chunks. Anyway, we started the test after a fairly lengthy discussion as to how much food to put in to O's stomach, at what rate, and what they'd be looking for during the study. They wanted to put in as much as he normally gets in an hour over five minutes, but I had to point out that if you put in that much in anything less than one hour, Owen WILL throw up. So the technician suggested half. I suggested a quarter. We settled on one third.
She pushed one third of his food (about 60ml) in to his g-tube over seven minutes, during which time we discussed how the test would conclude. Either Owen wouldn't reflux at all and would lie perfectly still for 90 minutes while the scan followed some radioactive material through his stomach, or he would throw up everything she'd just pushed in and the test would be over.
Natually, my son did just that. About twenty seconds after she'd clamped his g-tube closed, he spurted a fountain of formula all over his chest, and the test was over.
So, I wasted two 40 minute drives and a half hour in a radiology lab for the technician to tell me that Owen had failed the test. I'll say! She couldn't even get the equipment up and running before that child threw up! Failure is always an option in our household.
I did TELL her he'd throw up. She really should have listened.
Tina.
We're up at CHOW at least once a month, and sometimes more than once a week. Well, even though I officially hate the drive up there after my speeding ticket yesterday (AND that bastard cop was waiting in exactly the same spot today in the other direction, catching us 'criminals' while we ferry our little darlings to and from the hospital), I had to do it again today for a Gastric Emptying Study. (It's not a proper noun, but I feel it adds gravitas, don't you?)
The point of a GES is to observe how the stomach and digestive tract responds to food, and how long it takes said food to move through a child's system until there is no trace of it left in the stomach. Usually this takes about 90 minutes. So, we arrived at 11am as instructed, after skipping Owen's breakfast to ensure his stomach was empty. Most children would be extremely put out about skipping a meal, but Owen quite frankly couldn't have cared less - in fact, his mood was better than usual because he hadn't spent several hours blowing chunks. Anyway, we started the test after a fairly lengthy discussion as to how much food to put in to O's stomach, at what rate, and what they'd be looking for during the study. They wanted to put in as much as he normally gets in an hour over five minutes, but I had to point out that if you put in that much in anything less than one hour, Owen WILL throw up. So the technician suggested half. I suggested a quarter. We settled on one third.
She pushed one third of his food (about 60ml) in to his g-tube over seven minutes, during which time we discussed how the test would conclude. Either Owen wouldn't reflux at all and would lie perfectly still for 90 minutes while the scan followed some radioactive material through his stomach, or he would throw up everything she'd just pushed in and the test would be over.
Natually, my son did just that. About twenty seconds after she'd clamped his g-tube closed, he spurted a fountain of formula all over his chest, and the test was over.
So, I wasted two 40 minute drives and a half hour in a radiology lab for the technician to tell me that Owen had failed the test. I'll say! She couldn't even get the equipment up and running before that child threw up! Failure is always an option in our household.
I did TELL her he'd throw up. She really should have listened.
Tina.
Monday, March 1, 2010
Some days you just have to throw in the towel
Today did NOT start off well, I'll be honest with you.
First off, Mike's car is on the blink and he's not the most organised of people so it's still at the mechanics, a mere three days after he took it in. I wouldn't mind so much if they were actually working on the thing, but seeing as they can't identify the problem yet and Mike hasn't given them permission to do any unauthorised work, it's been there since Friday in the same blinkin' state it started in. Sigh. So today he has my car, which means I can't leave the house. I got all excited for about ten minutes planning a walk with Owen, but then I remembered the buggy's in the boot and Mike won't have thought to take it out before he left at 5.30am. Double sigh.
The next thing to go wrong was Owen waking up at 6am. This isn't SO bad, but seeing as I don't usually feed him until 7am, it was kind of irritating to have to go in to his room and shush him, then not be able to go back to sleep for the extra hour because my body assumed getting out of bed meant getting out of bed.
Well, Owen's feed was, as usual, a spectacular fountain of puke. We are down to the barest essentials now with his clothes as he's growing at an alarming rate (he's nine months old and yesterday we noticed he'd grown out of his 12-month babygrows. Awesome), and all the burp cloths are filthy from the weekend. I know it's not much, but not having anything clean and/or fitting for him just really, really gets to me. I mean, if he HAS to throw up constantly, the very least I can do for him as a parent is keep him clean and wearing clothes. I dunno... it just seemed relentless this morning.
So, after all this nonsense, I settled down on the laptop to load the internet... and the thing doesn't work. Argh. After FOUR attempts to get to my desktop in an hour it finally calmed down... and the internet doesn't work! Apparently there's an issue with my wireless card and I'm so far past caring about the waste of my life I just invested in it that I can't even bring myself to discuss it. Needless to say, the laptop is now lying abandoned on the floor and I'm on the big Mac. Mac = much better. I think my next machine will be a Notebook Air, or whatever they're called. They just never seem to fail!
Well... after FINALLY getting online here, I check my e-mails and what do I find? An innocent e-mail from my publishers. After waiting a whole week, sleeping badly and chewing my nails down to the quick... they are not picking up my proposal.
BASTARDS!!
I sulked for a good hour after reading that, then sent them a cursory e-mail thanking them for their time and informing them I'll be finding another publisher. It WILL get published, mark my words.
Anyway, after all this mayhem and foolishness this morning, I decided to treat myself to some new music on iTunes. I finally found that bitchin' song I love from Abby and Luka's wedding on Season 13 of ER and have been jamming away to it ever since. Because sometimes when things go wrong, you just have to throw in the towel and jam out to this:
"Can't Stop" by Ozomatli
Tina.
First off, Mike's car is on the blink and he's not the most organised of people so it's still at the mechanics, a mere three days after he took it in. I wouldn't mind so much if they were actually working on the thing, but seeing as they can't identify the problem yet and Mike hasn't given them permission to do any unauthorised work, it's been there since Friday in the same blinkin' state it started in. Sigh. So today he has my car, which means I can't leave the house. I got all excited for about ten minutes planning a walk with Owen, but then I remembered the buggy's in the boot and Mike won't have thought to take it out before he left at 5.30am. Double sigh.
The next thing to go wrong was Owen waking up at 6am. This isn't SO bad, but seeing as I don't usually feed him until 7am, it was kind of irritating to have to go in to his room and shush him, then not be able to go back to sleep for the extra hour because my body assumed getting out of bed meant getting out of bed.
Well, Owen's feed was, as usual, a spectacular fountain of puke. We are down to the barest essentials now with his clothes as he's growing at an alarming rate (he's nine months old and yesterday we noticed he'd grown out of his 12-month babygrows. Awesome), and all the burp cloths are filthy from the weekend. I know it's not much, but not having anything clean and/or fitting for him just really, really gets to me. I mean, if he HAS to throw up constantly, the very least I can do for him as a parent is keep him clean and wearing clothes. I dunno... it just seemed relentless this morning.
So, after all this nonsense, I settled down on the laptop to load the internet... and the thing doesn't work. Argh. After FOUR attempts to get to my desktop in an hour it finally calmed down... and the internet doesn't work! Apparently there's an issue with my wireless card and I'm so far past caring about the waste of my life I just invested in it that I can't even bring myself to discuss it. Needless to say, the laptop is now lying abandoned on the floor and I'm on the big Mac. Mac = much better. I think my next machine will be a Notebook Air, or whatever they're called. They just never seem to fail!
Well... after FINALLY getting online here, I check my e-mails and what do I find? An innocent e-mail from my publishers. After waiting a whole week, sleeping badly and chewing my nails down to the quick... they are not picking up my proposal.
BASTARDS!!
I sulked for a good hour after reading that, then sent them a cursory e-mail thanking them for their time and informing them I'll be finding another publisher. It WILL get published, mark my words.
Anyway, after all this mayhem and foolishness this morning, I decided to treat myself to some new music on iTunes. I finally found that bitchin' song I love from Abby and Luka's wedding on Season 13 of ER and have been jamming away to it ever since. Because sometimes when things go wrong, you just have to throw in the towel and jam out to this:
"Can't Stop" by Ozomatli
Tina.
Monday, November 16, 2009
God in my life
I've been thinking really hard about my spiritual leanings recently, what with Owen's baptism next week and his blessing at Stan's Christening in January. I haven't reached any conclusions yet, but I will say that my feelings towards God change on an hourly basis at the moment.
When Owen is clearly in pain and screaming so hard he makes me cry too, I shout at God. I ask Him why he's chosen MY family to go through this; why Owen, why me? It breaks my heart every single day to see my child live in such discomfort and to realise that he has known nothing else his entire, short, sweet life. Why would God put such an awful disease on the planet, and why would He decide that Owen is one of the ones who should suffer? I have taken to venting my frustrations out on Him because I find it a lot easier and safer than talking to Mike or anyone else. After all, God doesn't really answer me back, and I know He'll forgive me if I say something I shouldn't.
But it's so hard to understand it sometimes. It's just so damn hard to watch my little boy suffer so much and to not be able to control it. I find myself looking at the children of friends and longing for their lives instead of our own. That isn't right. How can it be right to covert their lives; their children? And it isn't even as though I want THEIR child - I just want MY child to have THEIR child's easy life. I find it very, very hard to listen to people when they say, "Well yes, Little Susie spat up too", or, "Little Jimmy did XYZ today!" So bleedin' what?! My child is delayed developmentally because he has GERD and there's not a lick of a thing I can do about it.
Those jealous feelings lead me to believe that perhaps God isn't in control of my situation. Perhaps He skipped this house. Perhaps He meant to fix Owen's health issues but He got caught up in Darfur or Iraq, helping those mothers with their frail little ones instead. I couldn't blame Him - they probably need Him more.
Which leads me to my other feelings about God.
I heard a lovely phrase the other day: "Special babies are given to special mothers". I don't know whether this is true, but it's certainly nice to think it is. Perhaps God does have a hand here. Perhaps Owen was given to me because I am the one Mama in the whole wide world who is suited to exactly meet each and every one of his needs. Maybe God thought that Owen is a strong enough baby to live like this and we are a strong enough family to cope with watching him struggle. Maybe these problems had to be given to somebody and it was just a matter of choosing the strongest recipients.
I don't know. In times of despair, I find all that very hard to believe.
Tina.
When Owen is clearly in pain and screaming so hard he makes me cry too, I shout at God. I ask Him why he's chosen MY family to go through this; why Owen, why me? It breaks my heart every single day to see my child live in such discomfort and to realise that he has known nothing else his entire, short, sweet life. Why would God put such an awful disease on the planet, and why would He decide that Owen is one of the ones who should suffer? I have taken to venting my frustrations out on Him because I find it a lot easier and safer than talking to Mike or anyone else. After all, God doesn't really answer me back, and I know He'll forgive me if I say something I shouldn't.
But it's so hard to understand it sometimes. It's just so damn hard to watch my little boy suffer so much and to not be able to control it. I find myself looking at the children of friends and longing for their lives instead of our own. That isn't right. How can it be right to covert their lives; their children? And it isn't even as though I want THEIR child - I just want MY child to have THEIR child's easy life. I find it very, very hard to listen to people when they say, "Well yes, Little Susie spat up too", or, "Little Jimmy did XYZ today!" So bleedin' what?! My child is delayed developmentally because he has GERD and there's not a lick of a thing I can do about it.
Those jealous feelings lead me to believe that perhaps God isn't in control of my situation. Perhaps He skipped this house. Perhaps He meant to fix Owen's health issues but He got caught up in Darfur or Iraq, helping those mothers with their frail little ones instead. I couldn't blame Him - they probably need Him more.
Which leads me to my other feelings about God.
I heard a lovely phrase the other day: "Special babies are given to special mothers". I don't know whether this is true, but it's certainly nice to think it is. Perhaps God does have a hand here. Perhaps Owen was given to me because I am the one Mama in the whole wide world who is suited to exactly meet each and every one of his needs. Maybe God thought that Owen is a strong enough baby to live like this and we are a strong enough family to cope with watching him struggle. Maybe these problems had to be given to somebody and it was just a matter of choosing the strongest recipients.
I don't know. In times of despair, I find all that very hard to believe.
Tina.
Friday, October 2, 2009
Reflux and more...
Somewhat of a sombre post today, as life has been throwing every challenge under the sun at us recently.
Last week, little Owen was checked by the doctor for his four month check-up and his lungs were declared clear, despite a small cough he'd developed. Then on Tuesday his cough got a lot worse and his voice became very hoarse. On the same day, I took him up to his Neurologist to have an EEG machine stuck to his head for 48 hours so they could assess whether his jerks are true seizures, myoclonic jerks or summat else. Well, I REALLY wish I'd postponed this procedure, because by Wednesday Owen's cough was just awful and his temperature went over 100F. Considering he's always been a cool baby (in more sense that one, arf arf) this seemed alarming, so off we trotted to the local ER to have him checked out - EEG monitor 'n all.
Apparently the boy had pneumonia. Blah. The doctors suspected it was a result of his difficult intubation during surgery last week, where it's likely some saliva got pushed down into his lung and festered for a few days. I felt just dreadful that I hadn't taken Owen to get it checked out earlier, but I wanted him to have the EEG study done. Ho hum; can't win 'em all. Anyway, on Wednesday he just screamed and screamed all night with the jerking, coughing, refluxing and the EEG machine all keeping him awake, and by Thursday morning he'd clearly had enough because he pulled that sucker off his head by himself. Now, those electrodes were GLUED to his head, so it must have hurt him quite a lot, but after I took the rest of them off he slept soundly for the next 24 hours. Like a baby, in fact.
So, he's been recovering nicely from the pneumonia, but he still has a very bad cough. I'm taking him back to the doctor next week to make sure he's all clear, but the antibiotics run out tomorrow so if he's no better I'm not sure what we'll do. His reflux has been just awful since his illness, too, as whenever he coughs he brings up tummy fluids and makes such a mess. It's driving me to desperation and I feel very sorry for this little lad. I wish I could have his problems instead.
All his issues and my pretty-much solo care for him has led me to develop post-partum depression. There. I said it. I have depression. I started therapy this week to try and get some help, but I'm not mad keen on my therapist just yet. As my sister put it, "So, she's had two strikes. One more and she's out?" Yup. I said very clearly to her that my writing/proofreading/copy editing career was just starting to really take off and I didn't want to make it a low priority, but she didn't seem to take any notice. She told me that essentially, in order to battle this depression, I'd have to let some things slide, and writing ought to be one of them. Uh... no. The other thing she did was hand me the stock leaflet they hand out to all post-partum women and told me to make sleep a priority. Yeah... I would, but I have a BABY!!
The thing I find it very hard to convey to people is exactly how much work Owen's feeds are. For weight gain, this child has to eat every four hours, whether he's hungry or not, and each feed takes one whole hour. There are then two hours of battling reflux, during which he will routinely bring up 1/2 to 2/3 of his food, and then I have to give him supplemental water (and usually one or another medications) one hour before his next feed, over half an hour. So essentially, I'm only able to be in a different room to him for that single half hour before his next feed. Sure, I could take a nap then... but what about getting dressed? Or having a shower? Or eating lunch? Or preparing his next sodding feed? Sleep? Pah!
So, I'm going back next week for another session, but if she wants to prescribe me medication I might just boot her. I've told her I just want to be able to talk about the things I can't talk to anyone else about (scary, PPD stuff that I never imagined would ever enter my head), so if she wants me to start popping pills, it means she hasn't really listened to me at all and it'll have to be goodbye. Fingers crossed it doesn't come to that though.
Plus... it would have been Da's 82nd birthday today. I miss him.
Tina
Last week, little Owen was checked by the doctor for his four month check-up and his lungs were declared clear, despite a small cough he'd developed. Then on Tuesday his cough got a lot worse and his voice became very hoarse. On the same day, I took him up to his Neurologist to have an EEG machine stuck to his head for 48 hours so they could assess whether his jerks are true seizures, myoclonic jerks or summat else. Well, I REALLY wish I'd postponed this procedure, because by Wednesday Owen's cough was just awful and his temperature went over 100F. Considering he's always been a cool baby (in more sense that one, arf arf) this seemed alarming, so off we trotted to the local ER to have him checked out - EEG monitor 'n all.
Apparently the boy had pneumonia. Blah. The doctors suspected it was a result of his difficult intubation during surgery last week, where it's likely some saliva got pushed down into his lung and festered for a few days. I felt just dreadful that I hadn't taken Owen to get it checked out earlier, but I wanted him to have the EEG study done. Ho hum; can't win 'em all. Anyway, on Wednesday he just screamed and screamed all night with the jerking, coughing, refluxing and the EEG machine all keeping him awake, and by Thursday morning he'd clearly had enough because he pulled that sucker off his head by himself. Now, those electrodes were GLUED to his head, so it must have hurt him quite a lot, but after I took the rest of them off he slept soundly for the next 24 hours. Like a baby, in fact.
So, he's been recovering nicely from the pneumonia, but he still has a very bad cough. I'm taking him back to the doctor next week to make sure he's all clear, but the antibiotics run out tomorrow so if he's no better I'm not sure what we'll do. His reflux has been just awful since his illness, too, as whenever he coughs he brings up tummy fluids and makes such a mess. It's driving me to desperation and I feel very sorry for this little lad. I wish I could have his problems instead.
All his issues and my pretty-much solo care for him has led me to develop post-partum depression. There. I said it. I have depression. I started therapy this week to try and get some help, but I'm not mad keen on my therapist just yet. As my sister put it, "So, she's had two strikes. One more and she's out?" Yup. I said very clearly to her that my writing/proofreading/copy editing career was just starting to really take off and I didn't want to make it a low priority, but she didn't seem to take any notice. She told me that essentially, in order to battle this depression, I'd have to let some things slide, and writing ought to be one of them. Uh... no. The other thing she did was hand me the stock leaflet they hand out to all post-partum women and told me to make sleep a priority. Yeah... I would, but I have a BABY!!
The thing I find it very hard to convey to people is exactly how much work Owen's feeds are. For weight gain, this child has to eat every four hours, whether he's hungry or not, and each feed takes one whole hour. There are then two hours of battling reflux, during which he will routinely bring up 1/2 to 2/3 of his food, and then I have to give him supplemental water (and usually one or another medications) one hour before his next feed, over half an hour. So essentially, I'm only able to be in a different room to him for that single half hour before his next feed. Sure, I could take a nap then... but what about getting dressed? Or having a shower? Or eating lunch? Or preparing his next sodding feed? Sleep? Pah!
So, I'm going back next week for another session, but if she wants to prescribe me medication I might just boot her. I've told her I just want to be able to talk about the things I can't talk to anyone else about (scary, PPD stuff that I never imagined would ever enter my head), so if she wants me to start popping pills, it means she hasn't really listened to me at all and it'll have to be goodbye. Fingers crossed it doesn't come to that though.
Plus... it would have been Da's 82nd birthday today. I miss him.
Tina
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